Lyme patients need to learn about victim blaming so they can protect themselves when visiting with their doctor.
A friend with long COVID recently saw a physician about memory issues she’s experienced since being sick. The practitioner told my friend she had too much going on in her life right now and just needed to get more sleep. My friend felt hurt and invalidated. “I felt like I was being gaslighted,” she told me.
“Actually,” I replied, “It sounds like that practitioner was going one step further than gaslighting: they were victim-blaming.”
Having long dealt with illnesses that can be discounted, including Lyme disease, babesiosis, ehrlichiosis, chronic active Epstein-Barr virus, and long COVID, I’ve learned that there are subtle but important nuances between these two ways of making a patient feel dismissed. As explained in “Medical Gaslighting and Lyme Disease,” to gaslight someone is to manipulate them into questioning their own reality—essentially, to make them believe they’re crazy. In my friend’s case, if the physician were gaslighting her, they would say something like, “You aren’t really forgetting things; you just think you are.” A patient who is gaslighted begins to wonder if they are imaging the physical symptoms they are experiencing, thinking maybe it’s just all in their head.
With victim-blaming, the practitioner doesn’t necessarily discount the symptom, but instead suggests that the cause is the patient’s own doing, rather than a physiological problem like an infection. In my friend’s case, the physician suggested that she brought on her own memory issues by taking on too much and not prioritizing rest. While these factors could indeed play a role in her forgetfulness, they were there before my friend had COVID, and she did not have memory issues then. She knew that the symptoms she was experiencing went beyond factors she could control, but the practitioner seemed to forget that patients know their bodies best.
Whether gaslighting, victim-blaming, or both, discounting of any kind—by medical practitioners and family and friends alike—is detrimental not only to a patient’s feelings but to their health. In their book Conquering Lyme Disease: Science Bridges the Great Divide, Brian A. Fallon, MD and Jennifer Sotsky, MD explain, “Discounting includes disbelief, non-acceptance of symptom fluctuations, rejection, and suspicion that symptoms have a purely psychological characteristic or are being exaggerated. Positive social responses are associated with better health in various studies, while negative social responses—particularly the experience of being discounted—are associated with poor mental and physical health.”[i]
Gaslighting and victim-blaming are more common with invisible illnesses where the patient doesn’t always look sick, but they extend to acute and obvious conditions, too. Right before I graduated from college—three years after I was bitten by a tick, but three years before I was accurately diagnosed with tick-borne illnesses—I tore the ACL in my left knee. A skier who was determined to get back on the slopes as soon as possible, I worked overtime at physical therapy after reconstructive surgery. In addition to my bi-weekly appointments, I did additional exercises at home.
When I saw my surgeon a few weeks later, my leg had regained some of the muscle that surgery had wiped away, but the injury wasn’t healing as fast it was supposed to. “This is terrible,” the doctor said as he examined the muscle tone in my leg. “You obviously aren’t doing your exercises. You need to work harder.”
Seeing me as otherwise young and fit, my physician expected “normal” recovery. When that wasn’t what he saw, his first instinct was to blame me, not to look for an underlying physical cause. As it turns out, Lyme disease loves to live in scar tissue, making recovery from surgery like mine slower and more difficult. Had either of us known that, both my surgeon and I would have realized that my lengthy recovery was the fault of an underlying infection, not of my own laziness. Instead, I took the surgeon’s admonition at face value, working my leg even harder than before, to not much avail. I felt like a failure.
Eventually, my leg healed, and I got back on my skis. But encouragement and understanding would have helped much more than the victim-blaming I experienced. “Recent research suggests that invalidation contributes to pain amplification, social isolation, and the overall burden of disease,” write Drs. Fallon and Sotsky. “These findings imply that family members and health professionals may be able to help the patient…by educating themselves about the disease, providing emotional support, and avoiding the potentially harmful impact of invalidating and rejecting interpersonal interactions.” Friends, family, and physicians of patients with any illness or medical condition—whether it’s Lyme, COVID, or a broken wrist—can help someone’s recovery by avoiding gaslighting and victim-blaming.
[i] Fallon, Brian A., MD and Sotsky, Jennifer, MD. Conquering Lyme Disease: Science Bridges the Great Divide. New York: Columbia University Press, 2018 (312).
The above material is provided for information purposes only. The material (a) is not nor should be considered, or used as a substitute for, medical advice, diagnosis, or treatment, nor (b) does it necessarily represent endorsement by or an official position of Global Lyme Alliance, Inc. or any of its directors, officers, advisors or volunteers. Advice on the testing, treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient’s medical history.
Opinions expressed by contributors are their own. Jennifer Crystal is a writer and educator in Boston. Her work has appeared in local and national publications including Harvard Health Publishing and The Boston Globe. As a GLA columnist for over six years, her work on GLA.org has received mention in publications such as The New Yorker, weatherchannel.com, CQ Researcher, and ProHealth.com. Jennifer is a patient advocate who has dealt with chronic illness, including Lyme and other tick-borne infections. Her memoir, One Tick Stopped the Clock, is forthcoming from Legacy Book Press in September 2024. Ten percent of proceeds from the book will go to Global Lyme Alliance. Contact her via email below.